Alex Fox, CEO, Shared Lives Plus

The other day I met the outgoing and much respected national Director for learning disabilities at the Department of Health, Anne Williams, who told me a story that made us both a little tearful.

Anne had met a lady who’d lived for countless years in a long stay hospital for people with learning disabilities. She had no speech, never went out and shrieked whenever someone approached her. The one thing she liked was her box of buttons which she sat and ran her fingers through.

Anne met the lady after she’d left the hospital and was living in a small shared home. In a short space of time, her life had improved immeasurably. She was able to interact with people, no longer shrieking in distress when approached. She had used the bus for what people would have assumed was the first time, if it hadn’t been clear that she remembered how to use it, probably from memories of going out as a child. Rather than receiving whatever was on the hospital menu that day, she was able to tell Anne what she had chosen for her lunch by taking her to her fridge and laying out her choices on her kitchen table.

To think that, needlessly, that lady’s life had, for decades, been reduced to a box of buttons, was what we found so moving about that story.

Now there are few long stay hospitals. Whilst most are staffed by good people doing their best, the Winterbourne scandal will hopefully speed the end of long large institutions as anything other than an emergency, very short term option for people with learning disabilities. Social care has come a long way and, at least in many places, people with learning disabilities are on a journey which will take them far beyond even the dramatic improvements in quality of life and aspirations experienced by the lady in Anne’s story and her contempories.

But you don’t have to dig very deep to find that the present age comes with its own sorry stories. Not just the, hopefully isolated, horrors of Winterbourne, but also the people whose experience of independence has become one of isolation. The author of a new report, Scapegoat: how we are failing disabled people, Katherine Quarmby has identified the increasing tendency of adults with learning disabilities to live alone as a contributory factor in ‘mate’ crime – the sometimes fatal bullying or abuse of people with learning disabilities by people posing as their friends.

Then there are the growing number of people who find themselves outside of the diminishing pool of people considered to have needs high enough to be eligible for support.

We’re in the middle of a huge change in both the culture of care and support (through the personalisation agenda) and its mechanisms (the moves towards personal budgets). Meanwhile, the way all of us live and aspire to live is also changing. And that’s before we consider the impact of all the cuts. So what Anne’s story has left me wondering is, when we look back on today’s models of care and support, what will still seem miraculous and liberating, and what will seem like a box of buttons?